Pins and needles plus deep heat anyone?

Mat48

Hi - I'm an irregular visitor here but am getting slightly to my wits end with this. I have posted on the RA site and the menopause site in my search to see why I'm getting pins and needles everywhere continually. It sometimes dies away to a sherbert like tingle but increasingly, especially after exercise it becomes widespread and acute.

I've seen my GP twice since it started and he took me of the Hydroxichloraquine I take for RA just in case that was the cause - although Ive been taking it plus Methotrexate for many months so he thought it unlikely and the dosages have been lowered for both not increased. I had a week off it but my ESR was coming back up (54) and then my hands have been getting stiffer and my knuckles swelling again so he put me back on it as it didn't seem to be making much difference. Yesterday I phoned the GP and he's emailed my rheumy to ask for advice on what next because of my ESR and swelling hands.

The pins and needles are now so extreme that I find myself continually wriggling and shaking my limbs - hand especially but knees and feet and thighs too. I'm also getting more and more frequent muscle ache - but I do exercise regularly so maybe just that as the physio thought it was. I don't feel ill, not experiencing any loss of motor control or double vision - just acute pins and needles everywhere that never go away.

I also have a deep heat that settles in patches but it's not felt on the skin and I've had it for a few years. Had put all this down to menopause but have never had any classic meno symptoms and I think I'm almost through but haven't ruled this out. I don't think it's fibro because I'm not in much pain apart from these achy, tight muscles sometimes and sore hands. All suggestions or similar experiences are of interest please - especially if you have RA!

Oh yes and I've had my thyroid (i'm hypothyroid), Vit B12 and full blood count taken and all clear! Mat

numptynora

Hello Mat, nice to 'meet' you.

I have RA and do experience 'pins and needles' in my thighs lower legs and my arms, it's as if the nerve endings pop up to the surface, I've had it for a couple of months and it's there most of the time, and if the restless legs decide to join in as well, need I say more......

I've no idea what causes it but I'll be asking my consult' when I see him in November. If you find the answer p'raps you could let us know?

Numps x

Mat48

Thanks that's really helpful Numps. I really want it to be the RA not the meds or some other horrible disease to add to the fray - so hearing that you also suffer from this is rather consoling to me as several other RAers on the NRAS site do too so hopefully it's another RA characteristic although it's not listed anywhere. My rheumy and GPs seem baffled.

Are you taking Hydroxichloraquine by any chance because when I stopped taking it for a week I still tingled but not as dramatically as I am now I'm back on it. I don't think these are connected - probably just coincidence as when I stopped taking it for a week it didn't disappear entirely but receded to a mild tingle. I think I'll stop again for a while again and see if it goes away. My rheumy says its very unlikely to be caused by the Hydroxy but then he would! Mat x

frogmorton

Hi mat

Good to see you!

I get pins and needles in my little finger (LT a LOT) and sometimes tips of all fingers a patch on back of my neck too.

I believe it is due to my neck

the one on my little finger really annoys me actually - it's like a hair is tickling me.

I think it's my neck as my back used to do this to feet and legs before it 'went' properly.

Love

Toni xxx

Mat48

Hi Toni how are you?

If it were just one place I wouldn't be so baffled but this is everywhere so it can't be one trapped nerve or something pressing on a nerve that's causing it can it? It's worse after activity so not so bad in the night. I'm wondering if it's the Hydroxichloraquine because it seemed to lessen when I stopped for a week although it didn't disappear entirely. I am on a different type now - Quinoric - so i'll maybe ask the pharmacist for Plaquenil again when I collect my prescription today. Mat x

tillytop

Hello Mat

Have just sent you a PM about this.

Tillyxxx

scattered

Pins and needles in RA can be caused by inflammation pressing on various nerves around the body and will only relent when the inflammation in controlled. I have carpel tunnel syndrome in both hands due to this, and intermittant pins and needles in my feet and legs because of it. For me, it is a sign of out of control disease and nothing more sinister, but make sure you get everything checked out.

I've had 'fizzy' and numb little and ring fingers for the last 6 months. It is very annoying. I hope you find your answer.

Mat48

Thanks Scattered. This is exactly what I have been thinking but GP and rheumy haven't acknowledged this yet. Have you been told this by any of your medical team I wonder or are you just making an informed guess?

I don't have a rheumy nurse and my GPs don't really know so I'm waiting for a response from my consultant via GP now. I feel that as my ESR has always been quite high (never below 30) since the RA started - but because I have very little by way of visible swelling ever - I'm apt to think that I don't really have RA because most RAers I communicate with are in the opposite position and have loads of pain and swollen joints regularly but low ESR/ CRP markers. So I always feel a bit of a fraud taking my drugs just now.

But I also worry that there must be inflammation with ESR sitting usually somewhere between 50 and 65 despite being on 2 dmards - so it makes sense to me that the pins and needles is the way inflammation is manifesting itself for me somehow?

But I had also started to fret that it might be something neurological such as MS - which is a big problem up here in the North of Scotland. So I looked up the symptoms and I think I'm a bit old at 49 and also don't have visual disturbances, balance problems (apart from being innately unbalanced - was lousy at sport at school etc!) or coordination difficulties, slurred speech etc. Just pins and needles and some increased ache and stiffening in many joints at present. But nothing scream worthy or what I'd describe as real pain although the pins and needles is burning now and is pretty uncomfortable? So your perspective is really interesting. I do hope it's what rheumy concludes too and I can perhaps get onto more effective medicines (or doses of existing ones) soon. Mat xxx

deedeeitsme

I also get pins and needles in my hands and feet and I get a patch on my outer thigh(nothing to see visibly) that gets pins and needley which is quite weird All part of the course of arthritis I think x Dee x

scattered

Hi Mat,

I was told by a neurologist when I had nerve conduction tests for carpel tunnel, and then again by my rheumatologist and rheumatology nurse when my feet joined in! The neurologist actually said that because I have RA there was no point him treating the carpel tunnel because the only way of getting rid of it was to treat the underlying inflammation that was putting pressure on the nerve where is passes through the joint spaces. True to form, I've found it gets better when my RA is well controlled and gets a lot worse when it isn't. Like I said in my previous post, currently I have very little feeling in my little and ring fingers and I know my RA is not controlled at the moment.

Funnily enough one of my first presenting symptoms was pins and needles from my fingers to my elbow in both hands. I had that months before I had any pain or visible swelling.

It's interesting what you say about inflammatory markers in bloodwork. For the first 3 years my ESR and CRP were only slightly raised, but for the last 3 years my CRP has just got higher and higher. I've found that blood results and actual physical symptoms do not go hand in hand. I've been to see the rheumatologist when I thought I had minimal swelling and he has found more swollen joints than painful ones. A lot of swelling in in the actual joint apparently. I asked the nurse at my last visit how the knew when a joint was swollen and she said that they try to feel all bones in the joint and whether or not it's spongy. Mine apparently aren't very spongy but she couldn't find the actual joint in any of my knuckles or fingers!

I hope all this makes some sense! Take care.

Mat48

Oh I think I need your rheumy Scattered! Mine is probably wise but he found very little at the last examination and yet my ESR was still high at 62 so I can't help wondering where that inflammation actually is if it's not to be felt anywhere? I've never had any ultrasound scans or x-rays and don't have a rheumy nurse to ask so I just have to rely on my GP. He's great but I don't think he knows quite as much as he'd like me to believe?

Until these past few weeks my high ESR hasn't been matched by pain, stiffness or swelling very much at all ever since I started on the DMARDs really. But just now I feel swollen and cranky but no real pain of the type I associate with previous RA flares. I can move about - albeit rather stiffly with muscle ache - and I can pick things up, chop, drive etc but it all just feels very corrosive and as if acid is burning under my skin and my nerves are like wee electrodes fizzing away. Does this sound like normal RA to you I wonder? I wish I was a bit more straight forward an RAer. I know everyone presents differently with this thing but just now I feel like an alien! Thanks for taking time to reply. Mat x

Tubby

Hi Mat

I have similar symptoms mainly in my left foot but also get the burning feeling in a thigh muscle ( nothing outwardly visible). I am on Sulphasalazine and Methotrexate which are only having minor impact. Suggestions so far from the Medics are tendinitis (which then traps nerves) and back problems. Will keep an eye on your posts to see if you get anymore guidance. I have had others tell me they have similar symptoms and was comforted that I was not alone!

Mat48

Thanks Tubby - I think the thing that has been freaking me out a bit is that it's everywhere - just all over not in any one specific place although hands and fingers do feel worst of all. For a few days at the start I was intensely itchy and a GP pal of mine suggested it might be menopausal so I went to a meno site to ask. Lots of people had similar stuff there and my GP agreed it could be but as I'm nearly through with my meno now and haven't had any other symptoms, and as it's very much burning and I have a high ESR again (my GP doesn't do CRPs) I'm fairly sure it's the RA now - especially after you and others have described having pins and needles yourself, even if not everywhere constantly like I am! Mat x

frogmorton

Mat48 wrote:

Until these past few weeks my high ESR hasn't been matched by pain, stiffness or swelling very much at all ever since I started on the DMARDs really. But just now I feel swollen and cranky but no real pain of the type I associate with previous RA flares.

Mat

Sometimes I can 'feel' the swelling myself (things don't 'bend' enough or are 'spongy'), but it's not drastically visible to others.

It makes so much sense what others have said about the 'swelling' causing pressure on other bits inside, (Scattered), and therefore the pins and needles etc.

Wouldn't it be nice if all medical people were consistent!!! :roll:

My hyrdoxy has always been plaquenil so I can't answer that bit either :?

Love

Toni xx

Mat48

Hi Frogmorton - yes some consistency would be good - but I'll settle for some communication from my rheumy via my GP for now! It's frustrating being covered from head to toe in these little electrodes which are all zinging and I do feel swollen somehow. I've probably told you all this tale before but when my boys were at primary school on two different occasions each of the younger ones came home from school nursing painful wrists. Both times I took them to the GP and in the first son's case we were told that it probably wasn't a fracture because of no swelling. 24 hours later he picked something up and screamed and we were sent for an x-ray and it was a full break.

Second son (or actually my youngest of three) came home with same thing a few years on. Went to a locum GP who patronised me horribly and said "no swelling so no fracture". She did this again second visit so I went to the hospital a&e and he was seen by a young registrar who said the same thing. Finally 5 weeks later we came back from holiday and he picked something up and screamed so I took him to my own GP who looked worried and sent him straight for an x-ray. The hospital were very embarassed to tell us that it had been a full break after all and had luckily set well naturally although they admitted it could have gone horribly wrong. I think this story says a lot about doctors but also about the way different people show inflammation or don't. Mat xx

PS re Plaquenil I asked the pharmacist and she said this time I'm getting a new generic brand simply called Hydroxichloraquine Sulphate so see how I get on. If I want Plaquenil again I have to ask my GP to specify on the prescription but she couldn't see that it would make a huge difference unless people were allergic to a particular type of filler or coating as it's all Hydroxy.

frogmorton

Precisely!

'They' are not perfect are they :roll: Your poor boys! good job Mum was there to advocate for them.

I wish it would go away for you too because it IS horrible.

Hope you are still managing to do your art?

Love

Toni xxx

Mat48

Yes thanks Toni that was well remembered - the art is getting done slowly but surely although my motivation and energy levels are still not back properly yet but then I spend a lot of time on displacement activities! Matx

skezier

Hi Mat,

I remember your art too... glad your still doing it cus we helped you through the I can't remember what you call them now but the gallery thing... See fatigue and fog are with me

I get pins and needles everywhere all the time and have for a long time so know its unpleasant and wish it wasn't happening to you.

Scattered is so right the swelling (big or small) pushes on nerves and blood vessles in fact all soft tissue and that can cause it... mines is easy its either the back and spine or the circulation or most likely all 3.....

Like being stung by nettle is the best I get :roll:

You hang in there and I hope things will ease up and get better for you soon. Cris x

Mat48

Yes you really did help me through the exhibition installing - you were all truly wonderful when I was in some awful hotel on my own with everything hurting pre diagnosis and I would get on my little iphone to be kept sane by all of you. I haven't forgotten but am very touched that you haven't either!

Thanks once again for keeping me right re the pins and needles - it does make complete sense and actually I'm lucky enough to be having a day off it - or at least its receded to a tolerable tingle now. It's a great comfort knowing that others have the same nettle sting experience, if that doesn't sound too selfish - sorry! And it makes complete sense to me that it is the inflammation of soft tissue pressing on the nerves. I actually thought that when it started but then went off on all sorts of red herrings via GP and internet. You are all stars (and sparkly tingly ones at that!) Mat xxxx

skezier

exhibition Mat that was the word I couldn't remember

Its is just like nettle sting.... but some of mine is real proper ones and needles and that maybe you should get checked out with neck and back?

Beware the internet my friend... you end up thinking your dead and buried

Your right it is good to know what is happening is 'normal' and well hang in there and good to see you again Cris xx

Mat48

Mine's not really in my neck and back Cris - it's strongest in my hands, wrists arms, hips, thighs and calves - and my feet, elbows and knees sometimes go quite numb with it - today feet have got it the worst. I do get it up my back and in my neck a little too but it's very generalised with me. I'll let you know what my rheumy says about it when the GP tells me. Mat xx

frogmorton

Mat48 wrote:

Yes thanks Toni that was well remembered - the art is getting done slowly but surely although my motivation and energy levels are still not back properly yet but then I spend a lot of time on displacement activities! Matx

Good on you!

Of course l remembered - my sister is an artist and lives in Scotland too

Glad you are managing some at least.

Love

Toni xxx

Mat48

Just to update you all - my GP phoned earlier to say my consultant says that I'm to be switched from oral MTX to injectable MTX. I asked him if this was expected to help with the pins and needles and he said he didn't know. He just knows that my rheumy thinks there is still active disease that needs managing so the hope is that by taking it by injection it will be absorbed more efficiently and also will reduce the chances of nausea if the dose is then increased.

The GP seems to think this will mean I can stop taking Hydroxichloraquine which he thinks might be causing the pins and needles but I know that my rheumy doesn't think it is. He said he didn't see why I was getting worried about the pins and needles as he could see nothing sinister that would cause it? I explained about it maybe being caused by the inflammation but he sounded baffled and not too interested really!

So fingers crossed it will make a difference to the pins and needles by knocking RA on the head. I start being injected in a week's time because the practice nurse is too busy tomorrow. I'm a bit nervous because I am going away to install an artwork in 3 weeks time and then abroad for a week's holiday but have been reliably informed by other RAers that this shouldn't present a problem when it comes to taking the stuff through security etc. Mat xx

skezier

Hi Mat,

Well at least its a start..... It is easier to absorb the jabs and they are a little 'stronger' - which isn;t the word I mean but I seem to have a few missing words just now cus the brain just doesn;t seem to know where it hid them :roll: -

I was thinking today about this one and Mat do your hands ever go a shade of white? See my 'proper' pins and needles do 'come' from the back and neck but the feeling of nettle rash could well be cus I have the acrocynosis and raynaurds..... I just wondered do your hands or feet go white?

Its harder when doctors and consultants don;t agree but the consultant will be in charge and he should know more about the drugs and disease than the gp so don't worry on that one.

Hope better days will soon come your way. Cris x

Mat48

Yes Cris my hands and feet do go very cold and a shade of white sometimes. I've mentioned this to GP and rheumy who both think it might be secondary Raynauds. Also deep heat thingy in limbs - all seem to go together somehow.

But that leads me back to hormonal changes because I used to be really hot and covered in eczema - now I'm usually cold - no eczema but RA so you win some and lose some it seems?! Hope you don't forget any more words Cris you should maybe get that checked out too? Mat x